Person with Chronic Fatigue doing a research study

Hello,
I am a researcher and I live with CFS (approximately 12 years). I typically study the relationship between medicine and society and I recently decided to turn my attention to living with CFS and how our lives become reconstructed in some ways and misunderstood in others. So I can use your help with developing my interview questions, topics, and prompts.

I am wondering what people think of my interview questions and how might you change or add questions. By responding, you are not in the research study, but helping guide the development of the interview. Please feel free to comment and add your questions to this list. Sometimes I provide just prompts for a conversations, sometimes they are statements, and other times they are questions. See below:

Describe the onset of symptoms up to your awareness that it might be CFS/ME
Tell me about how you gained the diagnosis
What would you like people to know about CFS?
Tell me your daily schedule when you are fatigued.
Tell me your daily schedule when you are not fatigued.
During times when you are fatigued how do you manage your illness and daily life?
In what ways have you changed your life since the onset of symptoms
Tell me about your experiences discussing CFS with medical providers.
Tell me about your experiences discussing CFS with mental health providers.
What is your treatment regimen, if any. Please include medications, vitamin supplements, and non-traditional treatment.

These questions strike me as odd...
Are there people with ME/CFS who have periods when they are "not fatigued"?

I know that a subset of ME/CFS patients would not describe their symptoms are primarily "fatigued" at all. But I doubt that they have an intermittent pattern of symptoms as you imply with those questions. Certainly, symptoms are exacerbated by exertion among other things, but I don't think it's common for the baseline feeling of illness to come and go from day to day.

I would say I am "fatigued" in that I constantly feel as if I have not slept for several days, would prefer to be lying down almost all of the time, etc—symptoms that fit well under the notion of "fatigue." If I found a way to make that feeling go away... well, that would be wonderful

Senior Member

What would you like people to know about CFS?
Tell me your daily schedule when you are fatigued.
Tell me your daily schedule when you are not fatigued.
During times when you are fatigued how do you manage your illness and daily life?
In what ways have you changed your life since the onset of symptoms

You might extend two of the sentences:
... when you are more fatiqued.
... when you are less fatiqued.
For some it might be irrelevant nevertheless (due to severity).

For evaluating the complexity I would list:

disturbances of feelings, including pain of diffrerent sort
disturbances of carrying out, including the dynamic PEM, but also a chronic exhaustion
disturbances of the spirit, including anxiety
disturbances of regulations, eg cold arms possibly other diseases (interdependencies are not already looked at well enough)

It might be interesting to think about the concept of sickness behaviour.
Feeling should well be considered as somehow a prerequisite for carrying out.

Senior Member

A lot of the day-to-day variation in ME/CFS symptom intensity comes from post-exertional malaise (PEM), which as you know is where many ME/CFS symptoms temporarily become worse for a period (of typically a few days to a few weeks) after some physical or mental exertion beyond the patient's energetic capabilities.

But on days when ME/CFS is worse due to PEM, it is not just the fatigue symptom that worsens, it will also be many other ME/CFS symptoms such as brain fog, muscle or join pain, sensitivities to sound, irritable bowel symptoms, stress intolerance, emotional sensitivity, and so forth.

So what you can and cannot do in your schedule on good and bad days is limited not just by fatigue, but also by symptoms such as brain fog (which can make it impossible to think or perform more complex household activities), inability to mentally handle too many stimuli (so busy or chaotic environments become very hard to deal with), or by stress intolerance which can amply even tiny stresses into something that the patient finds hard to cope with. One patient describes his PEM here.

There can also be lesser day-to-day or week-to-week variations in ME/CFS symptoms just due to the natural ups and downs, so that you may have a good week or a bad week. But these natural variations in symptoms are small compared to the substantial variations you get from PEM.

"Tell me your daily schedule on a good day, when your ME/CFS symptoms (such as fatigue, brain fog, stress intolerance, etc) are not as bad."

Another thing to consider when gathering data from ME/CFS patients is that there is a huge range of different severities of ME/CFS; you have: very severe, severe, moderate and mild forms of ME/CFS.

A very severe patient will be in bed 24 hours a day, with only a brief period for a few minutes where he or she visits the bathroom. Such a person may only be able to converse with others for perhaps a couple minutes a day, if that (and even those few minutes will be very hard going for them).

On the other end of the scale, a mild patient will usually be able to work full or part time but does so with some difficulty. So each level on this ME/CFS scale represents a quite distinct "lifestyle" for the ME/CFS patient; thus day-to-day variations in the schedule of a mild patient are going to look very different from day to day variations in the schedule of a severe patient.

So it might be an idea in your questionnaire to ask the patient how severe their ME/CFS is on this scale, so that you can put their answers into context.

Senior Member

Maybe it is possible to evaluate any feedback mechanisms in respect of the spirit:

If you are slowed down or are kind of anxious (not induced by your psychosocial situation but say by sickness behaviour),
how would that impact your courage?
Would it make you stronger because you are fighting against the anxiety that is not coming from your own spirit?
Or would you get discouraged over the time?
How do you counter your slowed down reactions? Would you get somehow adroit? Or angry? Or disappointed?

How do feel you when you are misunderstood? Would it make you stronger and more selfconfident?
Do you feel somehow guilty because there are no biomarkers to confirm your illness?

This might be needed to be set in relation to different weightings of the impacts (plus severity).
eg
physically 80%, mentally 20% disturbance, or
physically 20%, mentally 80% disturbance

A typical problem seems to be suicide, recently I think there was a study about invisible chronic illness and this issue.
It is bad that there is hardly any understanding to our illness (including friends, relatives, psychologists and neurologists). Therefore there is almost no emotional support (so, your work is appreciated). But the suicides are done because of the pain and inability to carry out, not due to any lack of intrinsic hope or any disregard coming from the society. I am afraid that would be as well a point, despite the problem that there is no common and established opinion in generel. An informative question might be, how do you judge the society in view of this possibility?

Your work is very much appreciated. It can be a very severe ilness even if sometimes practically invisible (at first glance).

These questions strike me as odd...
Are there people with ME/CFS who have periods when they are "not fatigued"?

I know that a subset of ME/CFS patients would not describe their symptoms are primarily "fatigued" at all. But I doubt that they have an intermittent pattern of symptoms as you imply with those questions. Certainly, symptoms are exacerbated by exertion among other things, but I don't think it's common for the baseline feeling of illness to come and go from day to day.

I would say I am "fatigued" in that I constantly feel as if I have not slept for several days, would prefer to be lying down almost all of the time, etc—symptoms that fit well under the notion of "fatigue." If I found a way to make that feeling go away... well, that would be wonderful

A lot of the day-to-day variation in ME/CFS symptom intensity comes from post-exertional malaise (PEM), which as you know is where many ME/CFS symptoms temporarily become worse for a period (of typically a few days to a few weeks) after some physical or mental exertion beyond the patient's energetic capabilities.

But on days when ME/CFS is worse due to PEM, it is not just the fatigue symptom that worsens, it will also be many other ME/CFS symptoms such as brain fog, muscle or join pain, sensitivities to sound, irritable bowel symptoms, stress intolerance, emotional sensitivity, and so forth.

So what you can and cannot do in your schedule on good and bad days is limited not just by fatigue, but also by symptoms such as brain fog (which can make it impossible to think or perform more complex household activities), inability to mentally handle too many stimuli (so busy or chaotic environments become very hard to deal with), or by stress intolerance which can amply even tiny stresses into something that the patient finds hard to cope with. One patient describes his PEM here.

There can also be lesser day-to-day or week-to-week variations in ME/CFS symptoms just due to the natural ups and downs, so that you may have a good week or a bad week. But these natural variations in symptoms are small compared to the substantial variations you get from PEM.

"Tell me your daily schedule on a good day, when your ME/CFS symptoms (such as fatigue, brain fog, stress intolerance, etc) are not as bad."

Another thing to consider when gathering data from ME/CFS patients is that there is a huge range of different severities of ME/CFS; you have: very severe, severe, moderate and mild forms of ME/CFS.

A very severe patient will be in bed 24 hours a day, with only a brief period for a few minutes where he or she visits the bathroom. Such a person may only be able to converse with others for perhaps a couple minutes a day, if that (and even those few minutes will be very hard going for them).

On the other end of the scale, a mild patient will usually be able to work full or part time but does so with some difficulty. So each level on this ME/CFS scale represents a quite distinct "lifestyle" for the ME/CFS patient; thus day-to-day variations in the schedule of a mild patient are going to look very different from day to day variations in the schedule of a severe patient.

So it might be an idea in your questionnaire to ask the patient how severe their ME/CFS is on this scale, so that you can put their answers into context.

Maybe it is possible to evaluate any feedback mechanisms in respect of the spirit:

If you are slowed down or are kind of anxious (not induced by your psychosocial situation but say by sickness behaviour),
how would that impact your courage?
Would it make you stronger because you are fighting against the anxiety that is not coming from your own spirit?
Or would you get discouraged over the time?
How do you counter your slowed down reactions? Would you get somehow adroit? Or angry? Or disappointed?

How do feel you when you are misunderstood? Would it make you stronger and more selfconfident?
Do you feel somehow guilty because there are no biomarkers to confirm your illness?

This might be needed to be set in relation to different weightings of the impacts (plus severity).
eg
physically 80%, mentally 20% disturbance, or
physically 20%, mentally 80% disturbance

A typical problem seems to be suicide, recently I think there was a study about invisible chronic illness and this issue.
It is bad that there is hardly any understanding to our illness (including friends, relatives, psychologists and neurologists). Therefore there is almost no emotional support (so, your work is appreciated). But the suicides are done because of the pain and inability to carry out, not due to any lack of intrinsic hope or any disregard coming from the society. I am afraid that would be as well a point, despite the problem that there is no common and established opinion in generel. An informative question might be, how do you judge the society in view of this possibility?

Your work is very much appreciated. It can be a very severe ilness even if sometimes practically invisible (at first glance).

Senior Member

You can certainly do that, but I suggesting is that when looking at a patient's daily schedule on both good and bad days, and are analyzing these ups and downs, you would really need to group the patients into the mild, moderate and severe categories, because the nature of the ups and downs will depend largely on the group they are in.

Senior Member

I think you need to learn more about CFS and ME before you can start writing your questions. It might help to work through a list of different criterias and see the symptoms.

Fatigue is a symptom of many diseases so describing yourself as having chronic fatigue doesn't tell us anything.

Asking people to describe their functioning when they have "fatigue" isn't to be useful as they may have other symptoms more debilitating. As an example I have recurrent flu like episodes with sore glands, throat and different infections (i.e. sinus, tonsils etc).

I don't know many patients who never have symptoms so asking people to describe their functioning when they don't have "fatigue" is going to confuse patients.

Your questions are going to be very hard for some of us to answer quickly. They ask (as an example) about treatment regimes but you are talking about a long term and largely incurable illness. Patients like myself who have been sick for 30+ years will have very long histories of trying different things,

The same goes for health care professionals. It's going to be hard to sum up seeing doctors over a 30 year period. If someone saw 1 doctor a years that's a lot of experience and it's not going to be the same. Some of us have outlived our doctors.

Moving to another question "how have you changed your life"? That's a strange one because many people will have had to give up their education, careers, been abandoned and divorced by partners and never been able to buy a home or become parents. It's more along the lines of what the illness has robbed from us. We didn't choose to do these things - we simply had no choice.

What comes across from your questions is that you are not considering the very long termness of the illness, how fatigue doesn't describe the illness, how symptoms can change from day to day or year to year or seasonally, how the illness robs the patient of normal life time events, how many treatments there are to try and how they do in and out of fashion and how serious it is for many of us who never feel vaguely well or normal.

These questions strike me as odd...
Are there people with ME/CFS who have periods when they are "not fatigued"?

I know that a subset of ME/CFS patients would not describe their symptoms are primarily "fatigued" at all. But I doubt that they have an intermittent pattern of symptoms as you imply with those questions. Certainly, symptoms are exacerbated by exertion among other things, but I don't think it's common for the baseline feeling of illness to come and go from day to day.

I would say I am "fatigued" in that I constantly feel as if I have not slept for several days, would prefer to be lying down almost all of the time, etc—symptoms that fit well under the notion of "fatigue." If I found a way to make that feeling go away... well, that would be wonderful

Senior Member

Because the most charakterizing sympton of ME /CFS is PEM.
I myself would opt for a slightly altered definition from 2012 (there called PENE instead of PEM)

1. It´s a reduction in pre-illness activity (this is prerequisite anyway).
2. It can be a physical or cognitive activity
3. Immediate exhaustion: The ability to act worsens while acting instead of getting improved
3. or/and the act worsens other symptons.
3. Delayed exhaustion: The exertion of acting causes the worsening of the abillity to act and/or other symptoms (including inducing new ones).
4. The exhaustion of the activity is not relieved quickly (including by rest) and may last long.

An example of an expalanation might be:

1. normal EXHAUSTION - exaggerated EXHAUSTION
The amount of released nitric oxide is too high. Instead to induce learning it causes al to soon exhaustion.
The underlying theory would be: Some NO = learning, after doing a while, more NO = exhaustion.
This is a logical possibility right?
If you exeggerate the amount of exhaustion it might be detrimental
(this must be considered)

2. healthy TIREDNESS - lacking TIREDNESS
The mechanism of tiredness can not take place due to high and lasting NO.
It might be Agmatine (a molecule related to NO),
which normaly would induce the removal of much NO-Snapses or whatever.
(NO "synapses" are obv. NMDR receptors, but anyone doesn´t need to know this for being able to draw conclusions)

Actually it turns out anyway that even the term "fatique" (tired) is not well chosen,
this NO-AGM explanation might be right or wrong.

ad 1. DELAYED
given the plauzible guess that the brain processes its information,
it is easily enough thinkable that later on too much "processing-NO" will be generated,
might it be in "argumentation" with other informations or strictly time conditioned.

It really depends. The longest period I have had was after the initial onset of symptoms (lasted 3 months) I had a period of about 4 months to where I slept normal, could walk 10,000 steps with no reprocussions, and do some light running. Then I had a bad crash and now the good periods can last from a couple weeks at a time to a few days at a time. I can’t do any type of strenuous exercise so not 100% by any means, but I can work a 40 hour work week, walk about 6000 steps a day during that period

Seven

I would not imagine that possible either my first 10 years but I do now ( not 100% fatigue) if I am on OI meds, my relentless fatigue goes away. I do have 2 periods in the day that comes back ( my nap times) but other than that not much fatigue if I am like on a couch or launching around.
PEM is my constant but if I don’t move I have periods of total normal. But I have been remitting relapsing since I started. I had a month ( last month) were I was like normal. This month back to brutal